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Life After Cancer: Addressing the Needs of 13 Million Survivors in the U.S.

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Life After Cancer: Addressing the Needs of 13 Million Survivors in the U.S.

Written by Sandra Levy
| Published on May 1, 2014

A survivorship care plan can help cancer survivors deal with a wide range of concerns—and help them make a healthy transition into their 'post-cancer' lives.

When it comes to cancer, there’s good news: People who have cancer
are living longer. But when treatment ends, many patients have a
plethora of issues that need to be addressed.

Having a
survivorship care plan (SCP) and a treatment-history summary can help
survivors make a smooth transition and have a healthy life after
treatment ends. So says Kim Thiboldeaux, president and CEO of the Cancer Support Community,
a nonprofit organization that provides support and education for people
impacted by cancer. She points out that there are currently more than
13 million cancer survivors in the U.S.

Thiboldeaux sat down with Healthline to explain the importance of survivor care and planning.

“You
are essentially a survivor from the day of diagnosis. A survivorship
care plan is what needs to be done post-treatment in making that
transition,” she says.

During treatment, cancer patients are
plugged in to a support system of doctors, nurses, and social workers.
Thiboldeaux says that when they receive the good news that their
treatment is finished and that there's no longer evidence of disease, it
can be difficult for patients to move forward if they don’t have
recommendations for follow-up care.

“Now is the time to get back
to a 'normal life.' [But] you can’t get back to normal. It’s a new
normal,” says Thiboldeaux. “We’ve not been doing a good job. At the end
of treatment, some cancer survivors feel like they are falling off of a
cliff."

Recommendations for Individualized SCPs

In
a 2006 report titled “From Cancer Patient to Cancer Survivor: Lost in
Transition,” the Institute of Medicine (IOM) recommended that every
cancer patient receive an individualized SCP. Thiboldeaux says, “There
are a lot of new guidelines from different regulatory bodies that state
that a patient should be provided with a written treatment summary that
they can take with them when they go back to their internist,
cardiologist, Ob/Gyn, and other doctors.”

> What You Should Know If your healthcare provider does not have a survivorship care plan, you can download and print a template from an organization such as the American Society of Clinical Oncology and ask your doctor to help you fill it out.

According to
Thiboldeaux, a treatment summary should contain information about the
kind of chemotherapy and the dose patients received, other medications
they were given, and information about when patients should get
follow-up screenings. In addition, it should take into account the
patient's living situation and other illnesses or chronic conditions
they may have.

“They need to know what doctor they should see now.
Should they go back to their oncologist or internist? What about post
treatment medications? What’s the medical surveillance?” she says.

An
SCP should also include referrals for treatment of issues related to
body image, depression, and other mental health concerns.

A Host of Issues Remain

Cancer
survivors have myriad issues and questions related to post-treatment
side effects—such as "chemo brain," which is described as a mental
fuzziness and a difficulty focusing, and some lingering physiological
effects, such as tingling of extremities.

Cancer survivors may
also have self-image, self-esteem, and psychosocial issues as a result
of scarring and other body issues after treatment, says Thiboldeaux,
adding that Issues related to intimacy and relationships are also
common.

She notes that many survivors are not aware of late-term
post-treatment side effects, such as cardiac issues that don’t present
themselves until months or years after treatment ends, and that many
patients also fear that their cancer will reoccur. “If they get a
headache or a pain, they may be afraid. Some become debilitated by fear
of their cancer returning. Patients may experience larger existential
issues that may cause them to think they want to change the direction of
their life. Sometimes it's hard for them to adapt back to their life
before treatment," she says.

Pointing out that the medical
establishment has been very focused on the medical side of treating
cancer, Thiboldeaux says, “We have to focus on the social, emotional,
and spiritual needs.”

Special Concerns for Young Survivors

Children
and young-adult cancer survivors have a unique set of issues.
Thiboldeaux believes they should be tracked for longer-term "late
effects."

Because some cancer treatments can move a woman of
childbearing age into premature menopause, Thiboldeaux advises women who
are interested in having a family to consider a discussion with their
doctors about fertility preservation. “They may want to talk to their
doctor about freezing their eggs before they start treatment. There are
support networks for them, such as Fertile Hope and the Livestrong
Foundation.”

Young adults may also be concerned about relationship
and intimacy issues, as well as their professional career track. “At
what point do you tell someone you are a cancer survivor? When you are
diagnosed with cancer, it can pull you off your professional career
track," she says. "They may say, ‘I lost some time on my career path.
How do I get back in the loop?’”

A Rosier Post-Cancer Future

On
an optimistic note, Thiboldeaux says, “We are on the verge of a
significant transformation shift, and we are starting to see support
services integrated and mandated. We are beginning to see accrediting
bodies recognize SCPs.”

By 2015, the American College of Surgeons’
1,400 cancer programs are mandated to begin providing patients with
SCPs. The American Society of Clinical Oncology (ASCO), the National
Comprehensive Cancer Network (NCCN), and the Community Oncology Alliance
(COA), have also issued guidance for SCPs. “With SCPs we can help
patients who are post-treatment get the best possible outcomes and
results,” says Thiboldeaux.

If your provider does not have an SCP,
Thiboldeaux recommends using a template from organizations such as
Livestrong or ASCO. “Bring the template to your doctor. Patients feel
very empowered when they take control. Tell your doctor, "I brought my
own SCP—please help me fill it out.”

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